My name is Richard McBride and I have ALS. I was diagnosed in November 2012 at 57 years of age. This blog will cover my journey. Just remember, I am living with ALS, not dying from it.

Wednesday, 16 April 2014

Morning Interruptus

I am having a rough start to my morning. It's nothing on my part; the Home Care worker arrived unannounced at 11:00 AM to do a full cleaning of my apartment. At the moment she called to say she was here, I was in the process of getting into the shower. I stopped my morning routine and after several attempts she figured out the phone board; I let her in. She came up quickly and knocked on the door before I even had pants on. I opened the door slightly, warning her to wait for a moment while I went into my room to dress.

The whole Home Care thing is getting off to a bumpy start. The worker who came on Monday arrived to discover that there was no care plan here in my apartment. Apparently it is in their system but the workers need a printed copy before they can do any work at all. So she emptied the dishwasher and tidied the kitchen, then left. Then last night I got a call from another worker saying she would be at my apartment before 10:00 AM. I was at Trivia so it went to message. I called her back saying that I would not even be up and about before 11:00. She said she would call me at 11:00; she meant she would come here at 11:00. Either way, I was in no means prepared for her when she arrived.

These days I sleep about 11 or 12 hours a night; it is simply function of the disease. My body is so busy trying to fight the loss of motor neurons, so busy trying to make nerve connections where they no longer exist, that it tires itself out. The medical team calls is "nerve exhaustion"; it's very different than muscle or mental exhaustion. When I am out at night, my social events almost always go past 10:00 PM. This means I get home and in bed at around 11:00 PM or later. So I sleep until 10:30 almost every morning. I have no trouble shifting this by a couple of hours either way; if I go to be earlier I get up earlier. I just need that sleep.

Needless to say, when the care worker arrived it blew the hell out of my morning routine. I got dressed instead of showering. Getting undressed and into the shower later today will not be impossible, just difficult. Most likely I will have a shower before I go to bed. It also means I have had to show the care worker where things are and what needs to be done, so I am slow getting to my breakfast and my blog. I suffer from "Morning Interruptus".

This isn't such a big deal; I can easily get past one morning's lost routine. What bugs me is that, on Monday when the first care worker came, I had expressly asked the Home Care agency not to send anyone before 1:00 PM. The woman handling the scheduling assured me it would not happen. Then it did. Apparently this care worker printed out her schedule before the change had been entered into their system and then did not check for updates.

All in all, it has been a bumpy start to Home Care. I called the scheduling desk today to let them know how their error had impacted me. The woman apologized profusely, understanding how this might make my day more difficult. She assured me it won't happen again; I am doubtful, we'll see. After all, it is an organization of people. We get it wrong a lot.